NORWOOD — For his tenth birthday, Noah Lamey received a few presents he really wanted, which were followed by the one he desperately needed.

After unwrapping a remote-controlled car and some other gifts on the morning of June 7, the Norwood School fourth-grader hopped into the family car with his mom, Susan, dad, Rob, and big brother, Nick, and set off for a round at Olde Masters Golf Club in Newtown Square.

“We got the call on the green of the sixth hole at about 2 p.m.,” Susan said. “Dad and I were getting ready to putt and Nick and Noah were in the carts.”

When Susan started jumping up and down, Nick walked over to his brother and whispered, “I think mom just won the lottery.’”

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Pretty much.

The call was from a transplant coordinator at Childrens Hospital of Philadelphia.

“My mom came over to me and said, ‘We got a heart,’” Noah said. “I was really excited at first and then a few minutes later while we were in the cart driving off the course I got emotional and started crying.”

Diagnosed with dilated cardiomyopathy last September after bouts of fatigue, belly pain and vomiting, Noah had been on the transplant list for a new heart since the first week of December. His heart was too weak to pump blood efficiently and would eventually fail without intervention.

“We quickly took off to the car, drove home and all got showered and packed,” Susan said. “We checked into the cardiac intensive care unit at 4 p.m.”

Another six hours passed before Noah was taken into the operating room.

“We could hear a helicopter take off and then land on the roof,” Rob recalled. “We think it must have been (transporting) Noah’s heart because everyone started moving us along after that.”

By the time Noah was wheeled into surgery, about 15 friends and family members had gathered at the hospital, many wearing “Heart 4 Noah” T-shirts.

“Me, Dad and Nick walked Noah to the O.R.,” Susan said. “We had his favorite song playing on a speaker, ‘The Man’ by Aloe Blacc. He was covered in his Eagles blanket. We told him we loved him and to be brave and that we would see him soon. I also told him to listen for me telling him to wake up, and that would mean he was all done. We were all in tears.”

As much as the family had been looking forward to Noah’s new heart, panic was the overriding emotion when doctors started discussing the various risks associated with the transplant.

“When we got to the hospital the doctors reviewed everything that was going to happen and kept telling us all the possible side effects,” Rob said. “They were like, ‘He may die during this. He may die during that.’ It was terrifying and you start realizing that you may not see him alive again.”

Noah was surprisingly calm in the hours leading up to his surgery. What little anxiety he had was due to the forthcoming anesthesia injection and not the saw that would soon be carving through his rib cage.

“I wasn’t too scared about the surgery,” he said. “I knew everything that was going to happen with the transplant — there were no surprises. But I hate needles.”

After his brother disappeared into the operating room, 11-year-old Nick slipped out of sight while his parents spoke with a nurse about when they could expect updates on the surgery.

“We found him around the corner in a cove curled up with his head in his lap,” Susan said.

“I was afraid there might be a rejection and that they might have to do it all over again,” Nick said. “I was also scared that he might not make it through the transplant.”

An hour into the operation, at about 11 p.m., the family got their first update.

“They said, ‘The heart is in Noah’s body and they are reattaching everything right now,’” Rob said. “I was in shock. I can’t even change the drain trap in my sink in an hour and they have already put a heart inside my son? It was unbelievable. When the doctor came out, he said it was a very uneventful surgery. One thing we’ve learned over the last several months is that uneventful is the perfect word.”

Susan, Rob and Nick had their first visit with Noah at 3 a.m.

“It’s one of the scariest if not the scariest thing I’ve ever seen,” Rob said. “Seeing your youngest son laying there, pale white, bright lights on him, so many tubes and wires.”

At one point, he had to leave the room to compose himself.

“His heart — you saw his whole chest — it was like, ‘Tha-thump. Tha-thump,’” Rob said while moving his hand across his chest. “And then you saw his neck and it looked like a kid who just got done with a marathon, the heart was pumping so hard.”

Two days would pass before Noah was fully awake and alert.

“He was able to shake his head and squeeze our hands,” Susan said. “We asked if he was in pain and he shook his head no. When they removed his breathing tube (the next) afternoon, they wanted him to say something — anything. He looked at us and said, ‘Peanuts,’ which, of course, we all laughed.”

Despite some routine post-op complications, including problems with his kidneys, blood clots and vomiting, Noah attacked his physical and occupational therapy sessions and “was practically running down the halls at five days out,” his mother said.

On June 21, just two weeks after the transplant, he was discharged and driven home in a limousine, courtesy of Cavanagh Funeral Home in Norwood.

In the weeks since, Noah has continued to gain strength and put his new heart through the paces by riding his bike and running the bleachers and track at the Interboro High School football field.

“He’s allowed to do anything with his legs,” Rob said before their Wednesday-night workout. “The doctors want us to push him to get his heart back going because it’s so easy for him now to just say he’s tired The heart that’s pumping in there is a good, big, strong heart that can do everything. It’s just getting the rest of his body ... in synch with it.”

(On Thursday, Noah’s doctors gave him the green light to use his upper arms and go swimming.)

With his immune system still compromised, Noah must avoid crowds, wear a surgical mask when appropriate and avoid anyone with the slightest hint of a cough for the next several weeks.

“Anybody who comes into our house I always ask them, ‘Are you sick?’ and ‘If you are sick please don’t come in,’” Susan said. “A simple cold could send Noah back to the hospital for weeks.”

It remains to be seen if Noah will start fifth grade on time in September.

“We are anticipating he will be able to go back to school, maybe not the first week, but maybe the second week,” Susan said.

A quarterback and captain of the 80-pound Prospect Park Termite football team and point guard for the 10-and-under Norwood Athletic Club basketball team, Noah is supposed to avoid competitive sports for six months.

“I’m most looking forward to basketball season,” he said. “If I’m not able to start the beginning of the year, I’m probably going to come in, maybe, a few weeks late.”

On the medication front, his daily routine includes twice-a-day shots to alleviate blood clots and the consumption of more than two dozen pills. Noah also makes two trips a week to CHOP for testing.

After spending 29 days in the cardiac intensive care unit after his diagnosis last fall, he knows the building well.

“There’s a reason why they are rated the No. 1 hospital in the world, because they know what they’re doing down there,” Rob said. “The sense of comfort (from) their nurses and their doctors, just the way they handled everything, just kind of reassuring me and Susan the whole time, ‘It’s OK. It’s OK.’”

Nick, who will be entering the sixth grade at Norwood School in September, has enjoyed seeing his little brother become re-energized and work his way back into shape.

He is also looking forward to other milestones.

“Right now, he can hit me, but I can’t hit him back,” Nick said. “I can’t wait for those restrictions to come off.”

Noah said it will take time for his atrophied muscles and under-utilized lungs to keep pace with his new heart.

“It just feels a lot better than the other one, except it’s hard getting back because I was doing nothing for nine months,” he said.

Noah’s journey from fatigue to diagnosis to transplant forced Susan and Rob to advocate for their youngest son at every turn to ensure the best care and outcome.

“I’m just sort of on autopilot,” Susan said. “Those instincts just kind of kick in. You start to ask questions that you hope you never have to ask to doctors. I became pretty much an expert in his care, his medication ... You just do it. It’s really an instinct.”

In addition to Noah’s surgeon, Dr. Christopher E. Mascio, and the rest of his team at CHOP, the Lameys have a huge thank you list.

“There are so many people to thank that I almost don’t want to start because I don’t want to exclude anyone,” Rob said. “Family, friends, so many in the community, the people at Yachtstock, the youth club and many others, including a lot of people we have never met.”

And then there is the donor family. Some time in the very near future, Rob and Susan will send them a letter through the Gift of Life Donor Program.

“It’s all anonymous and they can respond if they want to,” Rob said. “Every night when I pray, I pray for that family because I can’t imagine what they’ve gone through, losing a loved one ... their child lives on in my son.”

Noah still has a hard time believing how everything came together on his birthday.

“I was hoping for a big gift but that was like the best gift,” he said.

FYI: For more information on Noah and his condition, visit Heart4Noah.com.

To see Noah in a Videon Chrysler Dodge Jeep commerical with Jason Kelce, of the Eagles, click here.

About the Author

Tim Logue is a general assignment reporter for the Daily Times. Reach the author at tlogue@delcotimes.com
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